Your attitude may be my greatest disability

(Photo: Dan Kamminga/Flickr)

        Scott Jones, a musician, educator, and activist from Nova Scotia was paralyzed 6 years ago; a victim of crime. He struggles with suicide, something that challenges so many who live with disability. Whether since birth or adult onset or somewhere in between, a disabling condition or disease will and does impact quality of life; it also impacts the lives of those around us. For those such as I living with since birth situations, the impact for significant others will be lifelong, particularly for parents, often involved in daily care for years, for decades — for life.

The degree to which that impacts emotional health cannot be measured; each person is different and each person based on their new or altered circumstance, has different coping mechanisms to get through the day. For some, suicide is never far from thought — lots of people are able to quell those feelings and keep on going, but it’s a struggle. Loss of appetite, loss of sleep, loss of interest in things once enjoyed, distancing from family, from friends. Self-imposed isolation — a personal prison.

Mr. Jones goes on to share —  “it is not my disability that causes me to consider a way out — it is the people, the buildings, the opinions and beliefs that convey to me that I do not belong in this world.”

As for me, I’ve never considered suicide because I never thought that living with challenges required ‘a way out’. I is what I is. In the strictest sense, nothing that I had was taken away from me, so I cannot miss that which I have not known. For those who come to disability later in life, whether through disease, such as Rheumatoid Arthritis, or paralysis through a diving accident, the life adjustments often seem insurmountable. One’s mental adjustment will take care of the emotional adjustment and conversations with people in your world will take care of modifying the physical environment to match new circumstances. In many ways, it’s all about perspective.

I am in agreement with Mr. Jones when he speaks about how society unintentionally disables us. The able-bodied (I hate that term!) constructs a world that is compatible with their abilities; inclusion, accessibility and barrier free public places are afterthoughts. I’m forever mindful of accessibility of public washrooms, particularly those located in restaurants. Some of them are downright scary!

The sad reality is that our society has convinced us that to have a ‘dis’ability diminishes us. No wonder we’d want to kill outselves, right? Hold on a minute! People make the mistake of pitying us because they’re at the same time feeling sorry for themselves and thinking about how they would feel in the circumstance. To not get involved keeps them at a distance from us. Keeps them safe. But does it?  Complacency is what drags us down; complacency of the very people who should know better — business people in the community in which we live. They could be far more accommodating if they gave thought to how inexpensive it is to modify a few things in their place of business. Very often, it’s a one-off upgrade that generates lots of extra business because of it. Think about that. Then take a full inventory of your business space and see what you can do to be more inclusive.

Educating yourselves about what I and others in my situation need isn’t just about me and them, it’s about you as well. 

Society needs to re-evaluate what and how they communicate to those who are ‘differently able’. Sometimes the mesage can be unintentionally excluding — like the lovely, brand spankin’ new wheelchair designated parking space in front of a restaurant that doesn’t have a ramp. Hmm! Or, if a wheelchair user is assisted into the dining establishment, imagine their dismay to find that the bathroom is unsafe and won’t meet their needs.

My thoughts often go to nursing homes and other such care facilities, thankful for my current independent living. I worry about what my life will be like in ten years,  twenty years. The systems of elder care in the ‘institutional’ setting aren’t remotely ready for the senior with since birth disabilities, particularly those with intellectual challenges. Then there are those with mobility disorders who will not fare well in nursing homes as they are currently arranged. Insufficient staff is a huge problem as well. Not lost on me is the reality that I’m one serious fall away from becoming a nursing home statistic.

It’s important to recognize that time is of the essence and that the powers that be must stop talking and walk the walk. 

Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her geriatric Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca